Fact List

– FOP stands for Fibrodysplasia Ossificans Progressiva:
soft connective tissue that progressively turns to bone
– FOP is one of the rarest and most disabling genetic conditions known to medicine.
– FOP causes new bone to form in place of muscles and connective tissues.
– The new FOP bone grows outside the normal human skeleton.
– This process creates a “second skeleton” of heterotopic bone.
– FOP is the only known disease where one normal organ system turns into another.
– FOP is congenital (starts before birth) but the extra bone doesn’t form until after birth.
– Flare-ups of new bone growth can be triggered by sudden impact (ie: falls, bumps, injuries).
– Unfortunately, flare-ups can also happen for no reason and can’t always be prevented.
– Common symptoms of flare-ups: pain/tenderness, swelling and redness, warm to the touch
– It’s estimated that there are 3,300 people with FOP in the world (one in two million).
– There are approximately 800 confirmed cases of FOP around the globe.
– There are 285 people with FOP in the United States. I’m one of two (that I know of) in CT.
– Over 80% of individuals with FOP have been misdiagnosed, the majority as cancer.
– A classic characteristic of someone with FOP are malformed big toes.
– There aren’t any ethnic, racial, or gender patterns.
– Surgery to remove the extra bone is possible, but it would exacerbate FOP.
– There are currently no effective treatments or a cure for FOP, but there is always hope.

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